The Australian Human Rights Commission Ensuring health and bodily integrity: towards a human rights approach for people born with variations in sex characteristics report responded to Terms of Reference requiring it to 'inquire into, and report on, how best to protect the human rights of people born with variations in sex characteristics in the context of medical interventions, including surgical and non-surgical interventions'. The inquiry considered the 2013 report of the Senate Standing Committee on Community Affairs on involuntary or coerced sterilisation of intersex people, the Victorian Decision-Making Principles for the Care of Infants, Children and Adolescents with Intersex Conditions; 2017 Darlington Statement by Australian and New Zealand intersex organisations and independent advocates; and decisions of the Family Court of Australia.
The report states that The Commission notes that terminology in this area is contested, and inappropriate language use can have harmful consequences. The Commission is committed to consulting on this issue, with a view to adopting the most appropriate terminology in this project. The Commission’s use of the term ‘people born with variations in sex characteristics’ is intended to refer compendiously to the people whose human rights are the focus of this project. Other terms are also used in this context, and the Commission remains committed to further consultation on terminology.
The Commission comments that
People born with variations in sex characteristics in Australia have increasingly raised concerns with the Australian Human Rights Commission (the Commission), the Australian Government and the United Nations, about human rights violations in relation to medical interventions conducted without the full and informed consent of the person involved. These interventions are of particular concern in relation to infants and children.
The Report provides
recommendations for how Australia should protect and promote the human rights of people born with variations in sex characteristics in the context of medical interventions to modify these characteristics. These recommendations are framed by principles derived from international human rights law.
Applying a human rights analysis to medical interventions in relation to people born with variations in sex characteristics has three principal benefits:
• it promotes compliance with international and domestic law
• the human rights framework provides a near-universal set of norms by which to answer questions regarding medical interventions in relation to people born with variations in sex characteristics • it provides a framework to consider the claimed benefits of performing these medical interventions without a person’s personal consent, against any impingement on human rights.
These principles are set out in Chapter 2:
• Bodily integrity principle: All people have the right to autonomy and bodily integrity. Medical interventions on people without their personal consent have the potential to seriously infringe these rights.
• Children’s agency principle: Children and young people have the right to express their views in relation to decisions that affect them, and those views must be given due weight in accordance with their age and maturity. The ability of children to consent to medical interventions generally increases as they grow older. Children and young people who are able to understand fully the nature and consequences of proposed medical interventions should be able to make their own decisions about whether those interventions proceed.
• Precautionary principle: Where safe to do so, medical interventions to modify the sex characteristics of a child born with variations in sex characteristics should be deferred until a time when the child is able to make their own decisions about what happens to their body.
• Medical necessity principle: In some cases, to protect the child’s rights to life or health, it may be medically necessary for a medical intervention to modify the sex characteristics of a child born with variations in sex characteristics to occur, before a child can make their own decision. An intervention will be medically necessary if it is required urgently to avoid serious harm to the child.
• Independent oversight principle: Given the risk of making a wrong decision, decisions about whether a medical intervention to modify the sex characteristics of a child born with variations in sex characteristics is medically necessary should be subject to effective independent oversight.
The Commission recommends new legislative protections, guidance and oversight processes when there is consideration of medical interventions for people under the age of 18 years born with variations in sex characteristics. Legislation should enforce a general requirement that medical interventions take place only with the prior, informed, personal consent of the person concerned – subject to an exception in the case of medical necessity.
(a) Consent and decision making
Under international human rights law, a medical intervention may only take place without the individual’s personal consent where this is a medical necessity or medical emergency. The Commission recommends that this approach be taken in relation to medical interventions for people under the age of 18 years who are born with variations in sex characteristics. This general legal rule reflects a person’s rights of autonomy and agency over their body. A range of practical problems regarding obtaining consent to medical interventions are considered in Chapter 4. To address these problems, the Commission recommends the development of new guidance setting out what is required to obtain informed consent from people under the age of 18 years before performing a medical intervention for a person born with variations in sex characteristics. This guidance should ensure that • medical interventions are proposed only when medically necessary • consent in all cases is fully informed, and • children and younger people are empowered to participate in decision making in a manner consistent with their evolving capacities. Questions raised in this report regarding adequacy of current oversight mechanisms are not intended to suggest parents or doctors are not acting in good faith. Stakeholder submissions indicate quite the opposite. However, as the High Court observed in Marion’s case, good intentions may not be enough to protect children.
(b) Medical necessity
The Commission recommends that medical interventions in relation to a person under the age of 18 without their personal consent should only take place where the intervention is required urgently to avoid serious harm to the person concerned (the ‘medical necessity’ principle). An intervention is ‘required urgently’ if it cannot be deferred without a significant risk of serious harm. The Commission notes (in more detail at 2.3 Applicable human rights), the various UN treaty body committee comments to Australia to limit intervention without personal consent to circumstances of medical necessity. Chapter 5 considers the different rationales put forward for medical interventions in relation to children born with variations in sex characteristics and concludes that such medical interventions should only be permissible if all of the following factors are present: • the medical intervention is required urgently to avoid serious harm • the risk of harm cannot be mitigated in another less intrusive way, and intervention cannot be further delayed • the risk of harm outweighs the significant limitation on human rights that is occasioned by medical intervention without personal consent. Chapter 5 applies the principle of medical necessity to the situation of medical interventions for people born with variations in sex characteristics. The Commission concludes that some rationales used to justify medical interventions are not consistent with this principle including, for example, psychosocial rationales based on ‘normalising’ genitalia.
(c) Clinical practice and new National Guidelines
The Commission recommends the development of new National Guidelines to guide decision-making processes to ensure that medical interventions modifying sex characteristics are not undertaken unless intervention is a medical necessity. These are considered in Chapter 6. The recommended National Guidelines should include guidance on • obtaining informed consent and ensuring affected children and younger people are involved in decisions (see Chapter 4) • the application of human rights principles in determining whether a medical intervention is a medical necessity (see Chapter 5) • requirements for independent authorisation of certain medical interventions (see Chapter 7). The Commission recommends that the National Guidelines be developed by a national multidisciplinary expert group convened by the Australian Government and should complement legislative reforms recommended in Chapter 7. The National Guidelines should also promote the best standards of clinical care generally. The national multidisciplinary expert group should develop clinical guidelines and best practice and treatment protocols, including in relation to the provision of psychological and peer support.
(d) Oversight of medical interventions
The Commission recommends the establishment of Independent Panels to provide appropriate oversight of medical interventions in relation to children born with variations in sex characteristics, through the application of a human rights framework. Chapter 7 discusses how a human rights framework for decision making about medical interventions should be incorporated into Australian domestic law and policy, and what independent oversight mechanisms should be established. Oversight, in this context, refers to mechanisms by which an independent decision maker determines whether a medical intervention may be carried out on a person under the age of 18 without personal consent. The Commission recommends reform of oversight mechanisms by legislation by • establishing Independent Panels with responsibility to decide whether to authorise medical interventions in respect of people born with variations in sex characteristics • defining the circumstances in which interventions without personal consent may be authorised, which should be limited to circumstances of medical necessity • recognising that in emergency situations there should be an expedited authorisation process or, where this still does not provide time to deal with the emergency, a requirement for subsequent notification of the Independent Panel.
(e) Enforcement
The Commission recommends legislation to prohibit medical interventions in relation to people under the age of 18 years born with variations in sex characteristics otherwise than in accordance with the medical necessity principle. Additionally, there should be appropriate criminal penalties for carrying out a relevant intervention without authorisation from an Independent Panel. Chapter 8 discusses how obligations placed on health practitioners and others to apply to an Independent Panel prior to performing medical interventions might be enforced in practice, under criminal law, and through regulation of health professionals.
(f) Support, health records and data collection People affected by medical interventions modifying sex characteristics need adequate support. Stakeholders raised concerns about records having been destroyed, failure to appropriately share records between treating health professionals, and inadequate record security. The Commission recommends in Chapter 9 that governments provide sufficient public funding for peer support organisations, comprehensive psychological and psychiatric health services, and comprehensive and up-to-date consumer resources for people born with variations, and their parents or guardians. While support for individuals born with variations is central, supports for parents or guardians is also crucial to enable families to best understand all the considerations in caring for a child born with a variation. Australian governments should also consult on establishing and funding coordinator positions to integrate care across multiple specialties and institutions. The Commission considers that there is a need for long-term, longitudinal data on past and current practices to better understand the health and psychosocial effects of different interventions. The Commission therefore recommends the Australian Government facilitate the establishment of a national databank to assist research on the frequency of variations in sex characteristics and the effects of medical interventions and non-intervention. The Australian Government and state and territory governments should also fund and facilitate collaborative medical, psychological, health and wellbeing research, and socio-economic research to tackle stigma and disadvantage as relates to exclusion in schooling and employment.
The Report states
In 2013, the Senate Community Affairs References Committee (Senate Committee) conducted an inquiry into the involuntary or coerced sterilisation of intersex people in Australia (Senate Committee Inquiry). In its final report, the Senate Committee made a number of recommendations to better protect the human rights of intersex people. In its formal response in May 2015, the Australian Government welcomed the report and recognised the harm experienced by many people subjected to forced sterilisation. It committed to raising with the states and territories the Senate Committee’s recommendations regarding the legal framework regulating sterilisation for people with disability, with a view to promoting consistency between Australian jurisdictions. In respect of ‘involuntary or coerced sterilisation of intersex people’, the Government acknowledged the report’s main recommendations and specifically noted the benefit of further research on the desirability of ‘bringing the medical treatment of intersex variations into the jurisdiction of guardianship tribunals’ and/or the Family Court of Australia, but did not support amending the Family Law Act 1975 (Cth) to expand the Family Court’s role at that time. Broadly speaking, the Australian Government has emphasised the responsibility of the states and territories and has not committed to the implementation of particular reform in this area.
During the Commission’s inquiry, state governments had also been considering how to better protect the rights of people born with variations in sex characteristics and provide better support to them and their families. In July 2021, the Victorian Government committed to prohibiting deferrable medical interventions on intersex people without personal consent, and introducing an oversight panel to ensure compliance with the prohibition. The Commission welcomes this commitment. In July 2021, the report (i) Am Equal: Future Directions for Victoria’s Intersex community, outlined a collaborative approach that importantly includes people born with variations in sex characteristics and their advocacy and peer support organisations. Its three main focus areas – Future Intersex Resourcing, Future Intersex Health and Wellbeing Centre, and Improving Future Treatment – are consistent with the Commission’s views reflected in this Report. The proposals to develop: a mechanism to prohibit deferrable medical interventions modifying a person’s sex characteristics without personal consent; an oversight panel to ensure compliance with the prohibition; provisions which ensure the collection of data and transparency over what treatments are being performed and support for the development of National Guidelines, are welcome and consistent with key recommendations in this Report.
The Commission also welcomes the ACT Government’s work to protect the rights of people born with variations in sex characteristics and provide better support to them and their families. In October 2019, the ACT Government committed to developing a plan for managing deferrable medical interventions for people born with variations in sex characteristics. This has involved consulting with intersex people and experts in the field; reviewing the existing literature and initiatives in other countries; and testing key issues with stakeholder individuals and organisations. The Commission has engaged with the ACT’s efforts to formulate a proposal to develop such protections. There is congruence in the approach proposed by the ACT Government and that of the Commission’s, as articulated in this report.
The Commission's Recommendations are
1: Laws and practices concerning medical interventions to modify the sex characteristics of people born with variations in sex characteristics should be guided by a human rights framework based on the following principles.
1. Bodily integrity principle: All people have the right to autonomy and bodily integrity. Medical interventions on people without their personal consent have the potential to seriously infringe these rights.
2. Children’s agency principle: Children and young people have the right to express their views in relation to decisions that affect them, and those views must be given due weight in accordance with their age and maturity. The ability of children to consent to medical interventions generally increases as they grow older. Children and young people who are able to understand fully the nature and consequences of proposed medical interventions should be able to make their own decisions about whether those interventions proceed.
3. Precautionary principle: Where safe to do so, medical interventions to modify the sex characteristics of a child born with variations in sex characteristics should be deferred until a time when the child is able to make their own decisions about what happens to their body. .
4. Medical necessity principle: In some cases, to protect the child’s rights to life or health, it may be medically necessary for a medical intervention to modify the sex characteristics of a child born with variations in sex characteristics to occur before a child can make their own decision. An intervention will be medically necessary if it is required urgently to avoid serious harm to the child.
5. Independent oversight principle: Given the risk of making a wrong decision, decisions about whether a medical intervention to modify the sex characteristics of a child born with variations in sex characteristics is medically necessary should be subject to effective independent oversight.
2: The development of new resources to increase awareness of variations of sex characteristics in the community, educational, service and employment settings, and to reduce the associated stigma. To undertake this, the Australian Government and state and territory governments should fund community organisations led by people born with variations in sex characteristics to .
3: New National Guidelines on medical interventions for people born with variations in sex characteristics (see Recommendation 6) should set out what is required to obtain informed consent before performing a medical intervention for a person born with variations in sex characteristics. This guidance should require that:
(a) Treating practitioners provide accurate, up-to-date, evidence-based medical information including about: (i) the variation in question (ii) the exact nature of any proposed intervention, why it is medically necessary, and the degree of any risk from the intervention (iii) what alternatives exist, including other medical interventions or delaying or deferring the proposed intervention (iv) the likely long-term effects and outcomes if the proposed intervention is carried out immediately, at a later time, or if the intervention is not carried out (v) what uncertainty, if any, exists in relation to the current state of medical knowledge underpinning any recommended intervention (vi) any diversity of medical opinion about the proposed intervention (vii) the benefits of peer support, and contact information for relevant groups.
(b) Treating practitioners document fully the information provided, how they have included children in decision-making processes and the steps they have taken to effectively communicate the information, taking into account the age, decision-making ability or other characteristics of the person.
(c) people born with variations in sex characteristics and, where they are children, their parents and other family members, are provided information in clear, accessible, non-technical language that they can understand
(d) Treating practitioners refer people born with variations in sex characteristics, and where relevant their parents and other family members, to peer support and advocacy organisations, and services such as psychologists and social workers, who can provide further information to help inform their decision-making.
(e) children are included in decision making in an age-appropriate way, including by being given support to understand any medical advice and to express their views, with due weight being given to those views according to their age and capacity. Where a child has sufficient understanding, the child’s informed consent should be sought. Where the view is formed that the child does not have sufficient understanding for their consent to be sought, the reasons and evidence for this should be documented along with a description of any attempts made to seek the views of the child
(f) people with variations in sex characteristics and, where they are children, their parents and other family members, are provided with adequate time to make treatment decisions, with access to necessary support, to ensure they do not feel undue pressure to consent.
4: Medical interventions modifying sex characteristics of children may be conducted without personal consent only in circumstances of medical necessity. Circumstances of medical necessity exist only where all of the following factors are present:
(a) the medical intervention is required urgently to avoid serious harm
(b) the risk of harm cannot be mitigated in another less intrusive way, and intervention cannot be further delayed
(c) the risk of harm outweighs the significant limitation on human rights that is occasioned by medical intervention without personal consent.
5: All people born with variations in sex characteristics should have access to comprehensive, appropriately qualified multidisciplinary care, with input from mental health and other key professionals, and other people with variations. Care should be available across their lifespan and regardless of where they live.
6: (a) The Australian Government should convene and fund a national multidisciplinary expert group to develop National Guidelines on medical interventions for people born with variations of sex characteristics (National Guidelines), with input from specialist clinicians and health professional bodies, people with lived experience and their parents and carers, advocacy and peer-support groups, and human rights organisations. (b) The National Guidelines should reflect human rights principles including in relation to medical necessity (see Recommendation 4) and the provision of adequate information for informed consent (see Recommendation 3), as well as include best practice and treatment protocols for the management of different variations in sex characteristics and reviews of existing and emerging evidence-based research. (c) The National Guidelines should be reviewed periodically, to ensure guidance is based on the best available data and evidence.
7: (a) The Australian Government and state and territory governments should legislate to establish one or more independent panels with responsibility to decide whether to authorise medical interventions modifying sex characteristics of people under the age of 18 years born with variations (Independent Panels). (b) Whenever a clinician or clinical treatment team intends to make such a medical intervention, they should be required to apply to an Independent Panel prior to performing the intervention. (c) Independent Panels should be constituted by members with expertise that includes relevant clinical expertise, lived experience of being born with variations in sex characteristics, and human rights.
8: (a) An Independent Panel should only authorise a medical intervention for a person under the age of 18 years where it is satisfied that the person concerned either: (i) has the ability to provide personal consent and has provided such consent, or (ii) is not able to provide personal consent and the intervention is a medical necessity. (b) In rare emergency situations, where there would be a real risk of serious and irreparable harm to the person if the intervention were not carried out immediately, the Independent Panel should have an expedited process to consider the request for authorisation. Only where this still does not provide enough time to address the emergency, should an intervention proceed without authorisation. In those circumstances the relevant Independent Panel must be notified promptly following the conduct of the medical intervention. (c) Independent Panels, in determining whether a medical intervention is authorised, should be informed by the National Guidelines on medical interventions for people born with variations of sex characteristics.
9: The Australian Government and state and territory governments should legislate to prohibit medical interventions for people born with variations in sex characteristics otherwise than in accordance with Recommendations 7 and 8. There should be appropriate criminal penalties for breaching this legislative prohibition.
10: The Australian Government and state and territory governments should provide sufficient public funding for:
(a) sustainable operation of advocacy and peer support organisations led by people born with variations of sex characteristics
(b) comprehensive psychological and psychiatric health services, for people born with variations of sex characteristics, their parents and other family members
(c) improved access to peer support and health services, including online and by telephone
(d) comprehensive and up-to-date consumer resources for people born with variations in sex characteristics, their parents and other family members informed by clinical, peer support and human rights experts.
The Australian Government and state and territory governments should also consult on establishing and funding coordinator positions to integrate care across multiple specialties and institutions.
11: The Australian Government should facilitate the establishment of a national databank to assist research on:
(a) the frequency of variations in sex characteristics, including specific variations
(b) the short-, medium- and long-term effects of medical interventions and non-intervention.
12: The Australian Government and state and territory governments should fund and facilitate collaborative research, co-designed by community organisations led by people born with variations of sex characteristics, including:
(a) medical, psychological, health and wellbeing research, across the lifespan, that affirms human rights norms and helps people born with variations of sex characteristics to flourish
(b) socio-economic factors that put people born with variations in sex characteristics that risk leading to stigma and disadvantage, including emerging issues such as social exclusion in schooling and employment.
(c) any research that investigates the circumstances and needs of all sexual and gender minorities should disaggregate data on people born with variations of sex characteristics.
